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In-Person Powerful Patient Event

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On Sunday, November 15th, 2009, at a community center near Seattle, 150 doctors, nurses, patients, and family members gathered to discuss "How to be a Powerful Patient" in very practical terms. We recorded the event, so even those who could not attend the event will be able to benefit from the invaluable tips that were shared. For more information about the event, go to patientpower.info/events.

Our plan is to host similar events in other cities. We'd love your suggestions and to keep you up-to-date as we expand our activities, including publishing the book, "Patient to Patient: A Web-savvy Survivor's Guide to Facing Medical Crisis."

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What I’d like to do is we have chiefs of a number of departments,
particularly at the University of Washington here and one of them is
Dr. Russ Van Gelder, so Russ come on up. He’s an ophthalmologist. He
hasn’t been in Seattle that long, what a year? Two years. He came from
St. Louis. Russ, I’m going to have you come up here, and I’ve asked
Russ to give us a couple of tips. Now he obviously has an ophthalmology
perspective, but he’s been a doctor for more than a year or two and met
with thousands of patients, so the whole idea is whether it’s about
your vision or his experience in medicine what could help you get
better care, and I’ll quiz him a little too. Go ahead Russ.

Dr. Van Gelder:

Thank you Andrew. Thanks for the opportunity to come here this
afternoon. Andrew has been very gracious since I got to Seattle two
years ago and invited me on the Patient Power show where we had a
wonderful talk with a patient from Federal Way, if I remember right,
with macular degeneration and what he was going through, which really I
think people who listened understood the fundamental issues right now
in health care just through that one discussion.

In thinking about what’s the fundamental issue for you as a
patient, where is the difficulty in this, I think a lot of it comes
down to time. So this last week I’ve gotten my hair cut and I’ve put
new tires on my car, and I realized sitting in the Great Clips™ down
the street that the total amount of time I was sitting waiting to get
my hair cut and then getting my hair cut was pretty close to the amount
of time that a lot of my patients with vision-threatening, potentially
blinding, and even potentially fatal disease spend in my office, which
is crazy that you have this little narrow window of 20 minutes, 30
minutes, 40 minutes to really fully discuss something that impacts your
entire life. It took an hour to get my snow tires on. It was the same
thing. This is a trivial thing to do, and yet the amount of time that’s
allocated for this is the same as the amount of time that you have.

So how do you make the best of this, and I think the answers are
fairly straightforward. One is you really want to be sure you’re going
to a doctor that you can work with. Doctors come in all flavors, and
everyone’s personality is a little different. You want to be sure that
when you walk in that office you feel that your time is respected, you
feel that your time is valued, and you feel that you’re able to leave
only when you really understand what’s going on with your healthcare.

You can empower yourself in this by coming in prepared. Any
physician who challenges you for being prepared when coming in, that
should raise a yellow flag. If you come in with your stack of Internet
research and you say, ‘I’ve read about my disease.’ And the doctor
says, ‘No, don’t believe anything you’ve read. Here’s the story.’ Be
careful, right? You really are the prime stakeholder in this, and your
physician is your advocate in the system, not the other way around, so
I think that’s very, very important.

In choosing, again, a provider you really want to be in a system
where you feel you have that depth that you can wherever the problem
takes you that you’re covered for that, that there’s a system in place,
but finally you really have to go with your gut and you have to say,
‘Do I feel that I trust this relationship and trust that I’m going to
be able to understand my disease, what the options are, and to be able
to make an informed decision, because frankly a lot of these decisions
are based on incomplete knowledge; we just don’t understand that much
about a lot of diseases; and you’re going to have to make a decision
together where you have incomplete knowledge, and that’s not the most
comfortable position to be in sometimes.

So those are the tips I would have in approaching the system,
and one other advocacy thing I’d like to put out there is the fact is
we don’t have the answer to many, many types of disease. In our own
little world in macular degeneration, diabetic retinopathy, glaucoma,
we do not have magic cures for any of these conditions right now. We
can manage them, we can slow them, but we cannot cure them, and that is
only going to come with research. So in addition to being an advocate
for your own health I think it behooves everyone to be an advocate for
research.

I realize that there are mixed feelings sometimes about
research, but I will tell you as a practitioner the only way we will
make progress is through science in terms of getting real cures for
these diseases, which affect all of us in the room.

So Andrew..?

Andrew Schorr:

No, that’s terrific, and I just want to ask a little bit about this
adventure we’re on. How do you feel about second opinions? So you have
a lot of expertise in ophthalmology, and we’re going to hear from Rick
Munsen as well who does, if somebody says, ‘You know, I’m wondering
whether there’s a gap here or I’d love someone’s opinion.’ Do you
bristle at that?

Dr. Van Gelder:

I see a lot of second opinions, and I send out a fair number of second
opinions because I don’t have all the answers. If you have a doctor who
never says, ‘I don’t know.’ Either you haven’t asked enough questions
or they’re bluffing you because we do not have all the answers for all
the patients, and if you feel that the answers that you’re getting may
not be complete or you’re not sure based on what you’ve read yourself
from what you’re hearing I don’t think there’s anything wrong with
seeking an additional opinion because we all learn from that, and I’ve
certainly had cases myself where I’ve sort of hit the end of the train,
and I’ve tried everything that I know of, and I’ve read everything I
can, and I have no qualms about sending my patients off to another
expert and saying, ‘What do you think? Am I missing anything?’ and I
can learn from that.

So your doctor will not be offended if you look for another
opinion, nor should you feel shy if you feel that you have not gotten
all of your questions answered.